Thursday, May 26, 2016

Beyond the Label; We Are More

I am always surprised by how many parents of not-yet and newly diagnosed children seem fearful of the autism label.  Many keep the diagnosis a secret to try to avoid a certain stigma being attached to their child.  Others avoid an evaluation and/or diagnosis at all costs, because they think as long as it is not written down on an official piece of paper they can somehow avoid the reality that their child has autism.

I don't fault these parents.  I think they are trying to do what they think is best for their children.  We ourselves had some hesitation about being open about our son's diagnosis.  For us, it was never a matter of being fearful of getting a diagnosis, but more so a concern for his privacy and the matter of whether or not it was our story to tell.  When we sat down and had that talk after the diagnosis, we agreed that being open about his autism and proud of who he is was our best way forward.

The label for me has always been more about getting him access to the services and education he needs than anything else.  A diagnosis, in a way, was a relief.  It gave us a plan.  It gave us a way forward and it gave us insight into the best ways to help him achieve his highest potential.

I use both phrases when talking about my son's autism.  I sometimes say he is autistic.  I sometimes say he has autism.  Both to me are labels.  Labels that do not scare me.  Labels that make me proud.  Labels I hope that one day make him feel proud, and not ashamed.

Clearly, I don't mind that my child is labeled.  But I do mind when people can't see beyond that label.  There are so many areas of our lives that have become all about that diagnosis.  I fear that the doctors, and teachers, and therapists working with him will not always understand he is an individual, not a diagnosis.  He is a person, not a statistic.  He is autistic, but he is also just a boy.  He is funny.  He is strong.  He likes to snuggle.  He likes to jump.  Autism may be part of him, but it is not all of him.

And as he enters kindergarten next year, I can only hope that his teacher will take the time to get to know him--not just the codes on his IEP.  I can only hope that she will take the time to let his personality shine through, just as any kindergarten teacher would get to know any new student.  I appreciate that his teacher will be aware of his challenges and struggles from the beginning, but I hope she is also aware that he has strengths and brilliance.  Teachers would never make assumptions about typical students they have never met.  Why should it be any different for our kids?

You may know the label, but don't assume that means you know my child.

Parents across the country asked our autistic children to describe themselves.  And even in houses where autism is talked about openly, all of our kids found a lot of other words to tell the world how they see themselves.  In fact, most of our kids didn't even mention autism; proving that they know they are so much more than any label.  They are individuals; each one with unique characteristics and strengths.  

Autistic may describe them, but autism does not define them.  This is them.  They are boys.  They are girls.  They are more than a label. 

Oscar from Letters From a Spectrum Mom
Our Inspiration 

Jojo from Jojo's World
Maddox from Maddox's Autism Chronicles
Summer from Summer All Year Round

Oliver from Jojo's world

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